tickled pink? not really…

Below the picture is a guest post by Joanne [pictured below], a breast cancer survivor who has something she'd like you to understand.
…just so you know…no-one is particularly 'tickled pink' if they've actually had breast cancer. I don't think I'd be very impressed with a 'Tickled Teal' campaign for ovarian cancer awareness either! Good grief - so, read on!

October, traditionally known for Halloween, Autumn and harvest festivals, is now known as Breast Cancer Awareness month or 'Tickled Pink'.

I have no idea who came up with Tickled Pink but I seriously would like to bash their faces in. It's quite obvious, as with most things to raise awareness of breast cancer, e.g.: Facebook status to do with bra colour, handbags, gestation periods - that these people have never had to go through breast or any other cancers.

I don't get offended by many things but this offends me.

The strange thing is, because you have gone through it, your friends think you will automatically sign up to this shit and then they get all defensive when you set the record straight.

There was a time when I would go around buying Tickled Pink stuff thinking I was doing my bit for breast cancer awareness (and let's be honest it's everywhere in Asda throughout October) and not really give it much thought. Then BANG! 2 years ago I heard the words "it's breast cancer" well feck me, doesn't your perspective change then.

One mastectomy later, a 6 inch scar where there used to be a breast, surgeries, more scars and I can tell you it certainly isn't pink, it isn't fluffy and it damn well isn't funny.

Then I got to thinking about Tickled Pink, just how much of the profit of all the products sold actually goes to breast cancer awareness or cancer research? Not the whole lot I would hazard a guess, the supermarket will take a cut, will it be gift aided? Now the sheer volume of products sold means the donation will look huge, but not as huge as if everyone donated what they would pay for these products directly to BCC or cancer research - the amount would be phenomenal.

Please don't buy into the crap, it's a supermarkets way of getting you to buy products you normally wouldn't so they make more money out of the misery that breast cancer causes and all they do is wrap it up with a pink and fluffy name.

I'm a survivor. Don't turn October pink in my name, donate straight to breast cancer care or cancer research or sponsor an event. That's how to make the biggest difference. There are plenty cancer charities out there. Put your money where it will be most effective, and instead of changing your Facebook status to a bra colour (really offensive if someone has no breasts), change it to one that says "For breast cancer awareness month I have donated £XXX to BCC or cancer research".

Thank you,
~ Joanne

FIRST EVER WORLD OVARIAN CANCER DAY!!

This is amazing! Breast Cancer Awareness month is always at the same time, all over the world – ovarian cancer awareness month is at different times. So we never seem to achieve quite the same ‘solidarity’ of cause that has been achieved by the breast cancer girls.

Well, tomorrow is the first time that there will be a Worldwide ‘day’ for ovarian cancer awareness!

Wednesday 8^th May 2013 is the inaugural World Ovarian Cancer Day. Charities Target Ovarian Cancer, Ovarian Cancer Action, The Eve Appeal and Ovacome have come together to support this initiative, working together to raise awareness with the UK population.

Globally, 27 ovarian cancer organisations from 17 countries around the world have united to help educate their communities about ovarian cancer and its symptoms. For women living with the disease, and their families and friends, World Ovarian Cancer Day will build a sense of solidarity in the fight against ovarian cancer.

Ovarian cancer is diagnosed annually in nearly a quarter of a million women globally, and is responsible for 140,000 deaths each year. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared to up to 89% of women with breast cancer. In the UK, 7,000 women are diagnosed each year, and 4,300 women lose their lives each year. The UK has amongst the lowest survival rates in Europe.

A spokesperson representing the charities, said: “Realising a World Ovarian Cancer Day is remarkable, and we’re delighted that the UK is taking part. Uniting organisations around the globe with a focused message for the first time ever in support of ovarian cancer will get the attention that this disease needs. When people join together great things happen. Look at the success of breast cancer over the last 15 years – see what they have accomplished – it is time for ovarian cancer now.”

For more information on World Ovarian Cancer Day visit: www.ovariancancerday.org
Facebook: www.facebook.com/WorldOvarianCancerDay
Twitter: @OvarianCancerDY
Pinterest: @OvarianCancerDY

And watch this space for some photos of Ovacome in action today!! Coming soon!

it’s THAT month again

Ovarian Cancer Awareness month. The disease is Ovarian cancer [clue is in the title] and the PLAN is to make women AWARE OF THE SYMPTOMS. Because many women aren’t, and as a result, they are misdiagnosed, and lives that could be saved – well, they’re lost.

This sucks.

So, ladies, get your sensible heads on. We have a responsibility for our own health, so check out the symptoms. Yes, it’s a bore. Yes, it’s a little frightening when you read them. And YES you SHOULD read them and think ‘yikes, I have that!’.

They are remarkably similar to IBS. They are easy to mistake for everyday tiredness. They are subtle, but also, not so subtle, because they are NOT a norm for your body. Listen to your body – if any of the following are persistent for 3 WEEKS OR MORE, get your little self to the GP. ASK the question. Most of the time, these symptoms are nothing to worry about, but if they are PERSISTANT, then get them checked out.

• unexplained BLOATING
• FEELING FULL quickly or loss of appetite
• pelvic or stomach PAIN
• needing to pee urgently or more frequently than normal

The chances are it’s nothing serious – but then again, it could be. So, be sensible.

Research has found that over half of ovarian cancer cases are misdiagnosed. According to Target Ovarian Cancer, up to 500 lives could be saved if the disease was diagnosed much earlier.

“Early diagnosis is at the core of our £750 million cancer strategy and plays a vital role in our aim to improve cancer survival rates and save an extra 5,000 lives every year by 2014.

This is why last week we launched the Be Clear on Cancer campaign to raise public awareness of the key symptoms of ovarian cancer and encourage those with the symptoms to visit their GP.”

– DEPARTMENT OF HEALTH SPOKESMAN

So – get with the program!!

On a more cheerful note, I have reached my £3000 target for the Cuba cycle! I have a fabulous event coming up on Easter Sunday, so I am now going to try to beat what I raised last year. If you would like to help, please donate here – every penny counts!!

Thanks to everyone who has helped me! Especially my Bella :)

2013

Far too much rambling going on here on this blog…but I wanted to say how grateful I am for a year so far where the worst thing that happened was I have had [and still have!] a virus. Coughing my guts up! But it’s the first time for years [literally] that we’ve been able to just worry about the usual things. Like coughs and colds.

And like how we’re going to lose the 3 kilos we gained from stuffing our faces with too much cheese and biscuits at Christmas!

Anyone with cancer who is reading this – have hope. Sometimes it takes ages, but sometimes things DO turn around. But it doesn’t just happen on it’s own unfortunately. And there’s lots of battering along the way usually too. But eventually, there will be a light at the end of the tunnel. I was diagnosed with stage 3B in 2008. Not a lot of hope of living more than 5 years – but I HAVE.

So far, so good.

brilliant breast cancer advert

we need more funds for research.

 

An excellent video – and it has Hani in it! :)

Talc Use Linked to Ovarian Cancer Risk

This article is a little bit technical, but the long and the short of it appears to be – don't use talc in the vaginal area. It may increase the risk of invasive ovarian cancer.

This should be a warning on the pack maybe? It certainly wouldn't do any harm would it? And as a matter of interest, I used talc for years as a teenager.

Image: www.etsy.com
__________________________________________________________

This report is part of a 12-month Clinical Context series.

By Charles Bankhead, Staff Writer, MedPage Today

Published: April 07, 2011

Reviewed by Vandana G. Abramson, MD; Assistant Professor of Medicine, Vanderbilt
University School of Medicine, Nashville, Tennessee and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Action Points

• Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
• Note that the use of talc-based powder increased ovarian cancer risk by 30%.

ORLANDO - Use of talc-based powder significantly increased the risk of invasive ovarian cancer in a large case-control study that confirmed other analyses performed over the past 30 years.
Overall, talc use increased ovarian cancer risk by about 30%; however, the risk increased by two- to threefold among women reporting long-term frequent application of talc powder to the genital area, as reported here at the American Association for Cancer Research.
"I have always advised gynaecologists, if they examine a woman and see that she is using talc in the vaginal area, tell her to stop," said Daniel W. Cramer, MD, of Brigham and Women's Hospital in Boston. "There are alternatives. This study strongly reinforces that advice."

Results of more than 20 epidemiologic studies have supported an association between application of talc-based powder to the external genitalia and ovarian cancer, but the findings have met with considerable scepticism and criticism, in part, because of a lack of evidence for a dose-response effect, said Cramer.

The biologic plausibility of the association also has been questioned. Cramer previously hypothesized that talc had an effect on cancer risk similar to that of asbestos. More recently, he has come to believe that the association involves up regulation of heat-shock proteins, mucins, and other molecules that predispose to chronic inflammation.

Inadequate cleansing after use of talc, particularly frequent use, might allow the powder to migrate into the lower genital tract and initiate an inflammatory reaction, Cramer speculates.

Talc particles have been found in lymph nodes and other tissues of ovarian cancer patients, he added.

In an effort to resolve the uncertainty surrounding the talc-ovarian cancer association, Cramer and his colleagues analyzed data from a case-control study involving more than 2,000 women with ovarian cancer and a similar number of women without the cancer.

All study participants resided in New Hampshire and eastern Massachusetts. History of talc use had a reference date of one year before diagnosis for the ovarian cancer patients and use at the date of interview for the control group.

Logistic regression analysis examined the association between ovarian cancer and regular use of genital talc and from the perspective of total number of talc applications, estimated from patient-reported frequency and duration of use. The investigators adjusted for age, parity, oral contraceptive use, tubal ligation, body mass index, smoking, alcohol use, Jewish ethnicity, and family history of breast or ovarian cancer.

They performed separate analyses for all cases, nonmuscinous invasive cancer, serous invasive cancer, and serous invasive cancer unlikely to be familial.

For all analyses, talc use was associated with an increased prevalence of ovarian cancer; the magnitude of the difference between users and nonusers ranged between 20% and 40%, most often about 30%.

None of the analyses yielded significant differences among premenopausal women.

All analyses produced statistically significant differences for all study participants and for the subgroup of postmenopausal women, who accounted for 60% of the study participants.

Adjustment for clinical, demographic, and histological factors had minimal impact in analyses of the overall population or the postmenopausal subgroup.

For example, analysis of all histological subtypes yielded a hazard ratio of 1.30 in all participants (P=0.0003) and 1.31 for postmenopausal women (P=0.003).

Analysis of serous invasive cancer by menopausal status and after exclusion of women with Jewish ethnicity and family history of cancer resulted in odds ratios of 1.39 (P=0.001) and 1.35 (P=0.01) for all participants and postmenopausal women, respectively.

Analysis of dose-response associations by total applications (quartiles of none to ≥8,400) showed a significant trend for all women (P=0.002), premenopausal women (P=0.05), and postmenopausal women (P=0.02).

The trend held up in most of the analyses by histological subtype and by differences in demographic and clinical variables.

The significant trend for dose-response effect persisted whether women reporting no talc use were excluded or included (P=0.001).

"Menopausal status has a striking effect on the dose-response for the association," said Cramer. "Premenopausal women with frequent use may have more than a threefold increase in their risk for invasive serous cancer of the ovary. Repeating these analyses in existing data sets may help clarify the association between talc and ovarian cancer."

Cramer told MedPage Today that the association between talc and ovarian cancer has led to a lawsuit against talc manufacturers by a woman in South Dakota. Depositions are expected to begin later this year.

The plaintiff's attorney previously represented patients with mesothelioma in successful lawsuits and settlements involving asbestos manufacturers, Cramer added.

The study was supported by the National Cancer Institute.

________________________________________________________________________________

There is another article here.

Jo

Today my friend Jo died. She had cervical cancer – a recurrence killed her. I have lost it completely, and can not stop crying. Her husband kindly took time out of his own grief to let me know this evening. So I should get a grip – he did. Why can't I?

This is a photo of Paul and Jo, taken by Karen. For me it says everything – it's 'Just Jo'…that sweet personality shines through, that happy confidence. I just love it.

Jo was a really lovely person. I met her through this blog. She commented on one of my posts ages ago, when I was still in 'omg I am going to die' mode. She told me not to worry, she had been in remission for years and I would be ok. And it helped me. A LOT. We chatted back and forth and eventually became friends on Facebook. There's a limit to how much conversation you can have in the 'comments' box…

She had a Fairy garden on FB. She would play it on her iPhone under the bedcovers when she couldn't sleep [insomnia seems part and parcel of cancer treatment – we 'watered' plants at 3.30 in the morning…]. Her favourite films were Jesus of Nazareth, Enemy of the State and Conan the Barbarian?? heh heh – get on Conan!

Then, on the 31 December 2009 she told me she had worrying symptoms and was waiting for results. It seemed like a urinary tract infection.  But sadly, it wasn't. After that we were more closely in touch, as I added her to the group on FB..Jo was our 'Honourary Member'. The only woman in the group NOT to have ovarian cancer – but not the only one who has had cervical.

Jo commented on a blog post I did [it was a special post for LIVESTRONG day.]

"I have been here for certain and I think it is an inevitable part of the process of coming to terms with how fragile, brittle and frightening life can be. When you get cancer you stare into the abyss. But I have gradually come to terms with it and feel less daunted about life these days. For me it was less about me dying, and more about what and who I was leaving behind. Frightened by how I would die, but not about actually dying itself. It all has to be sorted out in your head, and it can be lonely. No - it IS lonely. Without my faith and my family I don't think I would still have my mental health to be honest. With their love and support, I am stronger for going through it now despite all the darkness. Hugs X "

It says a lot – her comment. Even then, she was calmly accepting the inevitable. Jo was a very inspiring woman – not just because of the way she dealt with her cancer – her life was inspiring. She ran a business, she ran a household with a wonderful Son [has to be capitalised :) ] and husband [I know they are wonderful because she told me] and she had her Faith. But it was always her two men that she referred to first when she spoke of love and support.

Jo even managed her death well. "Frightened by how I would die, but not about actually dying itself."  Her main worry was leaving her husband and her beloved Son. Happily, Jo died peacefully. I am so grateful for that. For her husband and son, and for her. And [selfishly] for me too – I feel relieved that she fell asleep on Thursday 20th October and moved gracefully towards peace over Friday and Saturday before passing over at 5:30am this morning.

So. Goodbye to yet another friend. Rant? Yes, probably should. But I can't. I am so exhausted with death. So. No. No rant. Just a heartfelt plea to Someone, Somewhere to find a cure.

The Kenya Cycle seems more relevant every day – these women would all still be here IF we had a cure! I would not be breaking my heart over Jo. And Gaynor. And Sweet Jane…my friends…

And yes Jo. You're right - it IS lonely.

A list in loving memory of my friends:

Jo McGowan
Gaynor Hall
Diane Davis Waller
Sweet Jayne Armstrong
Bj Gallagher
Patty Higgins
Thelma Huggett
Kelli Godfrey
Annie Prouse

We won't forget you! And don't worry girls – we WILL find a cure…

another goodbye

This week I lost a truly lovely friend. The picture above just sums her up for me -  that glorious smile. It says everything about her. She was a person who made me feel welcome in her heart the minute I met her. She was a breath of fresh air in a world where a lot of people seem to have an agenda – Gaynor didn't. She was just as transparent as glass. And brought in as much light. A beam of sunlight. For me anyway. 

We met not that long ago for lunch. What happened? It is so surreal that she has died. I can't quite get my head round it. Shock? Denial?

Gaynor had a recurrence. Ovarian bloody cancer. Of course. They tried everything – different types of chemo, different diet etc. A horrible regime that never seemed to end. And was constantly painful. Horribly painful. But they did their best. And Gaynor fought like a tiger!
But it wasn't enough! Not through their lack of trying, but through lack of knowledge of WHY this disease comes back so viciously. We so desperately need more research into ovarian cancer. 

Hence I am doing the Kenya cycle - not for me. For my friends, here and gone. To support those still battling, and to honour those we have lost.

It was amazing to see her strength in the face of it. She didn't complain, she didn't whine. She got on with her life as much as she could – driving her girls to swimming, going to work – usually exhausted, but always positive…here she is with us. We had a lovely day – full of happiness. And teal balloons!

Gaynor was a tiny person – same height as me, but slim as a willow. And bubbling with life – she never stopped! But the cancer simply ate her alive. It moved to her bowel and caused ascites. Ascites is horrific and very distressing. She was constantly having it drained as it was crushing the rest of her organs. The process was unpleasant, but she cracked on with it, texting and calling in the midst of what must have been a very uncomfortable experience.

She had serious guts. She was very, very brave.

She leaves three daughters, and of course her husband – all of whom she was so proud. She was always reporting on their achievements, large or small. I keep thinking of them all. And what their day must have been like when Gaynor died. I was shocked and tearful all day and achieved nothing sensible. How did they manage?
She died peacefully and painlessly in her sleep. I was so relieved to hear that from Andy, her lovely husband. They must have felt as if it was all a nightmare – perhaps hoping they'd wake up and it would all have gone away. Would that it had.

Gaynor. My dear friend. I miss you so much already. Your brave and intelligent attack on your illness. Your funny, witty remarks and stories - your calls...your advice. Your support of me. The energetic, non-stop way you lived life. Your fighting spirit. Your amazing shoes :) About which we had an ongoing and hilarious discussion.

You'll live on in my heart and memory, and in your beautiful girls of whom you were so proud - so you're not gone. Not really.

Just to say au revoir. Not goodbye - just until we meet again.

Gaynor does not want flowers at her funeral. As usual, she was thoughtful to the last  - she would like a donation to Megan's justgiving page instead. Or to Ovarian Cancer Action.

what a fabulous weekend!

we had the loveliest day yesterday – Rick and Judi treated Julie [yes, yes, all my friends – far too many of them starting with a J!] to a horse gallop down the beach at Ilfracombe for her birthday. We drove [well, the FH did], Judi and Rick brought the fabulous picnic and Laura brought her Mum, Julie, who had visions of being shoved out of an airplane! It was a surprise – I haven't been able to talk to Julie for weeks, in case I let the secret out!

The beach at Ilfracombe

But it was much nicer than that – she had an hour of riding a beautiful horse called Apache across the sands of Ilfracombe at Crow Point. It's a stunning beach – rather cunning if one is prepared to walk a little way – one passes the families with their shrieking kids, barking dogs and sundry other horrid stuff, until one arrives at a beach that would make an Australian surfer gulp. Empty. Deep. And stunning. But no waves ;)

We drove down sundry skinny lanes with billions of humps to get there [almost vomiting over all the beastly humps], paid a toll [!!]then, whilst Julie was cavorting about on her horse, we set up Judi's picnic and delved into the wine. The weather was completely perfect! Windy, but warm and sunny…get on!

The sand dunes were great, the company was delightful. SOME people went bonkers in the dunes…and yet still managed to keep their wine in the glass! 
  I loved it. So good to be with friends and no pressure at all. Eventually we left; Julie and Laura had a 'roof down' crisis with their car, but we managed to get back to Judi and Rick's in one piece for more wine and the remains of the picnic on Judi's amazing  front. Making the most of the last bit of sunshine, sitting on their gravel patio just finished the day off perfectly.

But even this day was darkened by cancer – Julie said that the young woman who accompanied on the horse ride has had leukaemia. Twice. Poor child. I really did not want to know this. But - it seems impossible to escape it!! – and it's driving me mad. I am sick and tired of cancer…but then, I always was I suppose. Just that now, it's more personal. Isn't it?

Good news though!! My Aunt has reached the end of her horrible chemo/radio regime…her email today made me smile. At the same time, it made me cry – the pain she is enduring….ffs…does it never end!!??

Tomorrow I am off to the GP for shots for Kenya. Whilst I am there I am going to ask about depression. Not sure that I have it, but I am sure I need help with something.  Maybe my brain is broken?

And by the way – thank you so much the people who have already tried to help me with messages of support – it means a lot…